Genetic Discrimination Bill Clears Hurdle in House

The House voted Thursday to give final approval to a landmark bill that would bar discrimination in health insurance and employment on the basis of a person's genetic information. The bill has been 13 years in the making; President Bush is expected to sign it.

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Here's a case where persistence pays. For 13 years advocates have been trying to get a bill through Congress. It would ban employers and health insurance companies from using genetic information to discriminate against people. Yesterday that bill passed the House. It's on its way to becoming law.

But as NPR's Julie Rovner reports, it does not cover everybody.

JULIE ROVNER: The past 13 years haven't been easy for the bill's lead House sponsor, New York Democrat Louise Slaughter. A microbiologist by training, she's been excited by medical advances in the form of genetic tests that could predict whether people might develop serious ailments.

But while Congress was nitpicking at her bill to ban genetic discrimination, many people simply weren't getting those tests, she said. Of particular concern were women at risk for genetically linked breast and ovarian cancer.

Representative LOUISE SLAUGHTER (Democrat, New York): They were advised not to be checked, even though it was rampant in their family until this law was passed to protect their health insurance and their job.

ROVNER: Yesterday's 414-1 House vote, following last week's 95-0 vote in the Senate, finally accomplished that feat. The bill makes it illegal for employers to use genetic information in making hiring, placement or promotion decisions. That includes the result of genetic tests or other predictive genetic information such as family history.

Health insurers couldn't use such information to deny coverage, change policy provisions or raise premiums. The bill doesn't solve every potential problem with the misuse of genetic information. For one thing, it doesn't take effect until 18 months after the president signs it.

And for another, says Kathy Hudson of Johns Hopkins University, it only covers employers and health insurers.

Dr. KATHY HUDSON (Johns Hopkins University): It does not cover long-term care, disability life insurance, and it does not cover individuals in the military. So there are still areas that I think we need to explore and look at whether genetic information is being used appropriately.

ROVNER: But Hudson says that this bill does cover the two key barriers - jobs and health insurance - that have made people fear getting tested most. Scientists also hope it will make people more willing to participate in research studies to help find ways to use genetic information to help prevent diseases.

Francis Collins is head of the National Human Genome Research Institute. He's been urging passage of this bill from the start.

Mr. FRANCIS COLLINS (National Human Genome Research Institute): And finally I think we're coming out of those clouds into the sunshine where we have an opportunity to take full advantage of all these remarkable research advances without putting people at risk of discriminatory consequences.

ROVNER: So patients will no longer have to do things like get their genetic tests under assumed names, or ask doctors not to put test results in their medical records. President Bush is expected to sign the bill.

Julie Rovner, NPR News, Washington.

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